Putting your best foot forward

Hi again! Remember me, I'm the momma who seems to run out of minutes at the end of every day before having time to write a new update but as my amazing boss likes to say you either have excuses or results so here I sit refusing to get up until this update has been written. It does help though that I'm on bedrest and can't really get up, but more on that later......
Zackary has been doing great, I mean truly amazing! His pain level is a little higher each day but that is because he continues to push himself so hard each day, he even has a work out routine he does on non-PT days that puts my workouts to shame!
Just shortly after the last blog we had another set of x-rays be taken and shipped off to Baltimore for the doctor to read just 2 short weeks later (HA). I think I'm starting to see a pattern here. Anyways, I received the email that stated 'Zackary is now healed medially, anteriorly and posteriorly.  He has a little more to go laterally but that has improved greatly as well.' After reading to the therapist he informed me this was fantastic news! Yeah, you'd think I'd be use to medical lingo by now but not quite. For those on the same page as me it means the bone is healed 75% around the rod (front and sides) and only needs a little more growing on the back side of the bone. Why they couldn't have just said that is beyond me. The next part of the email was my favorite though and didn't need any interpretation. 'He can now be weight bearing as tolerated.' SAY WHAT?! It was so nonchalantly added in there like this wasn't the news we had been waiting for since March 24th! Weight bearing, walking on his own, no walker, no crutches no nothing! We were so excited! Zackary's first response was 'so I can throw my crutches away and just start walking?' Not quite, you haven't walked in 7 months it's not going to be that easy. Johnathan's first response 'So I can tackle him now?' NO! Luckily the last line of the email said 'Still no sports, running or jumping.' They must have known they were talking to a house full of boys. LOL
The days and weeks to follow since that news have not always been sunshine. There were tears when he came to the quick realization this wasn't going to be as easy as he thought. The therapist asked him to balance only on his left leg, this is something he couldn't even really do prior to surgery. He couldn't even hold it for 1 second with the goal being a 30 second hold by the end of the year. I'm proud to say he's up to about 2-5 seconds depending on the day and he's moved on to single leg presses as well! He truly is the strongest kid I know on so many levels. He has started on only using one crutch when he's at home and taking 1-2 steps between couches or bathroom with no assistanace and is working on losing the limp and teaching himself that he no longer has to walk on his toe, a habit he's done since birth.
Since the last time we connected we also had Halloween, one of our family's favorite holidays. I had been dreading it for awhile not wanting Zackary to feel left out. I cried as I made a post the neighborhood website. It was hard having to ask everyone to park their cars with enough room for a wheelchair to make it through and teared up every time we passed a house with stairs that I knew he wasn't going to make it to. Well one day my sister and I came up with a great idea to incorporate his wheelchair into the costume and made it a whole family affair! And of course, though there were times his cousin had to bring him back candy from houses he couldn't reach, we still had enough candy to feed a whole town by the time we were done! It was a great night with lots of laughter and sugar. So may I introduce to you the X-MEN, Miller style!

Magneto, Rogue, Cyclopes, Beast, Storm and Professor X 

   

Halloween came and went, we finally figured out a great schedule with PT, work and school and finished up Johnathans football season with them going 6-1 and we are anticipating a state championship win from the Varsity team that went 8-0. Needless to say things were going smooth. I didn't think that was ever going to happen. Then came November 6th. Our lovely family walk turned into a hot mess real quick. While sitting on the curb waiting for his command to cross the street Dakota, our 110 lb lab, wagged his tail excited to catch up to dad and brother who had already crossed the street. Right as I gave the command to go my foot went down on his leash lying on the ground. I knew it was too late and did my best to fall as safely as possible knowing his leash was wrapped around the leg I just had surgery on less then 2 years ago and I wanted to keep all that hardware in tact. Well, I did manage to save that ankle with just a bit of rope burn but came down twisting and with all my weight onto my right ankle. Snap, numbness and screaming is what filled the next few seconds. Instantly I knew it was broken (a talent I mastered over the years). The ER confirmed my break and was put in a splint and had a doctors appointment the next day. After the doctor explained this as a very strange break and something the assistant had never seen before (what can I say, I'm talented!)

They had me scheduled for surgery by the end of the week and have filled this week with 4 doctors appointments in addition to Zackary's PT appointments. The healing process has been so much more difficult and painful even though this was a much less invasive surgery then last time. We are still trying to clear up a few issues but overall the procedure was a success. I've been on mostly bed rest for over a week and a half now and we have double the amount of medical equipment!
Luckily we've had a lot of help with family to drive to and from appointments, bring us food, pick up and drop off Johnathan and every once and awhile get a dish washed here and there while Adam continues to work and Johnny goes to school. I've been told this has a quick recovery as well so I should be walking in about 4 weeks from the surgery date. Also, I'm only in a boot not a cast so I'm happy about that! This means I'll be on crutches for Thanksgiving and will hopefully be walking by Christmas. Our family motto was always 'we'll be back to normal by Christmas' but I never had us being this far from normal at this point!
Well, with xrays for both of us in about 2-3 weeks there should be an update about that point. If anything I promise to update prior to Christmas because we know how much you guys support us with your prayers and thoughts and you deserve to be as updated as possible. Have I told you lately how much we love you all and thank you for your support?! Well we do! With that said, it's time to get back to healing!

Until next time~
Momma Miller

No news is good news...right?!

I did not do a single post in September and on top of that next week will mark 2 months home! I honestly have no idea where the time went but the good news is that's 2 months closer to fully recovered for Zackary. Besides the normal life of work, school, football, PT and the added fun of Balloon Fiesta and family get togethers the main reason I haven't written is because I've had nothing major to report. Each day at PT is that much better but we've been sitting on our hands for over 3 weeks waiting for x-ray results to come back from Baltimore. Dr. H does not like emailed copies of x-rays saying they take away enough of the contrast that it doesn't reflect the proper density of the bone. Fair enough I suppose.
About a month ago we counted down the seconds of our last leg lengthening. It was an extremely slow going process and even though you could see the results of the 6 months of lengthening it was hard to believe that each session was really doing anything. It was such a surreal feeling for both Zackary and I when it was complete. It was like the feeding schedule of an infant. It had to happen no matter our location, the time or how busy we were. Everything would stop 3-4 times a day so we could find a plug, listen to a lovely noise for 3 minutes and document the time and length. But that has quickly become a distant memory and we have found ourselves with a little more freedom away from the 3 days a week of PT we still do each week.  Like I mentioned before, PT is a slow and steady race and his flexibility continues to grow each week. We started with 120 degree bend in his knee when we first got back into Albuquerque and now he's up to 132-135 degrees depending on the day! This is huge for him, it visually looks like more then he ever had in the past!

This picture reflects a non doctor victory that almost brought me to tears. We got him dressed like usual but that day he wanted to wear his new  long socks, he had wore short socks all summer. We put them on and he just repeated over and over "oh my gosh, oh my gosh, OH MY GOSH!" I freaked out thinking there was something poking at his foot and he said no look! I've never had socks that line up before. They are in the same place on my legs! Yep, bring on the water works! It's the littlest things every once and awhile that truly shine light on how far we, HE, has come over the last 6 months. His socks lined up, that's all he needed to see and to understand and that moment was all I needed to take a deep breathe and realize how strong, amazing and grateful my amazing boy was...socks, that was it! I am truly thankful for lined up socks!







Moving forward in the weeks to come, after lengthening was over we finally were able to get our x-rays after a fun back and forth game between the doctor in Baltimore, the doctor here and the x-ray company. For the record that's one too many set of ears in the game of telephone! LOL We mailed the disc to Dr. Herzenberg overnight knowing he said it would take about a week to read once they got to him. Then on Wednesday I called to get a report, exactly one week later. I don't think he could have paid for a better excuse when his nurse let me know he took the CD with him to another country where he was teaching at for the week! So another week passed and was told via email he would get to them asap. Does anyone remember how patient I am? Yeah, it was a long 2 weeks to say the least. The weekend came and went and I reached out again on Monday knowing that was his clinic day and would be in the office. We finally received the review! A lot of big doctor words that I'm sure my nursing friends and family would understand and that our PT told us was great news! My favorite line was 'the bone is remarkably better', like they were surprised! HAHA do they know what type of amazing God is on our side? Anyways, overall it said that the bone growth on the sides are looking great, the front was doing okay but the back still had a bit of catching up to do. They said the hardware is all still in tact. This is great news because Zackary has definitely been a lot more active being home. They also upped his weight bearing to 50%!!! Like HALF! That excites me so much to get that feeling of a possible end in sight.
Though we are quickly approaching the 'average 8 month' mark of beginning to end process we understand how special Zackary is and no matter how much longer he takes to heal it will be worth it. I still feel in my heart that Christmas is a realistic goal for him being able to walk on his own but know it's all up to that bone, so we continue to pray, go 100% at PT, stick with his vitamins and bone stimulator machine and wait for the next x-rays that should be in about 2 weeks.
Oh and in case you wondered what took up the last few weeks of our lives here is a picture of Johnny's homecoming night (yes he's taller then me and old enough to go to homecoming) and the other photo is of Zackary and his cousin Quentin enjoying the 10 day long Balloon Fiesta where Zackary sadly had to miss out on flying due to his condition but did a great job at working the fan, handing out cards and not complaining once of how much walking or work he had to do or how cold it was outside each morning at 4am!

Until Next Time (hopefully less the 2 months!)~
Momma Miller

Unorganized Chaos

I have sat down to write this post 3 times and have rewritten in my head about a hundred times! This is odd for me because I can usually sit down and the ideas just flow, right from my brain to the page and I just let it go but not this time. I don't know where the struggle is... do I not know what to say? Do I not know how to say it? Is it going to come across the way I want? Since when have I cared? With that said I will do my best to keep you all informed of what the last few weeks have brought but it comes with the disclaimer that it will most likely be a chaotic unorganized mess. Hmmmm as I typed that out it became very clear that that was a perfect description of what life has been for the last month or so, unorganized chaos...




In the last month we have made 3 trips to Albuquerque, each packed with fun family events and tons of luggage. I was doing my best to slowly move back so our car ride wouldn't be too packed when we finally moved home. Each trip reminded me how much we love our home but at the same time it drew a fear in both Zackary and I that I didn't know could happen. We were scared to move back home. We had lived in Baltimore for 5 months, almost to the day. It had become our life, our home, our routine of calm, no one else, scheduled and not influenced by any outside source but PT. Zackary was worried about not fitting in, not having all my attention, not being able to keep up and of course missing out on our weekly Taco Bell dates. I was concerned about having to adjust to our 'new normal'. Did I even know what that was? NOPE! I knew it was going to have to be slower paced, saying 'no' to more things then I ever have before and having to bring my attention to 2 more boys that I loved just as much as Zackary all while keeping up with a house, dog, football, work and family. Deep down I knew I could handle it, but I just wasn't ready for the change






Whether I was ready for it or not it was happening but before the big move could happen on the 19th we had to have our last doctors appointment that took place 2 weeks ago from today. We walked in confident with our heads held high knowing we were officially done lengthening. We had done the math and were prepared to get the all clear. Then the good ol' doctor walked in and said 'congratulations you get to go home.' YAY! And then....' But with that said..." ARE YOU KIDDING ME?!?! His new bone growth isn't as dense as he would like it so he asked if we would go backwards a cm AGAIN and then go forward for the last cm. Luckily he learned to start off the appointment with good news so it wasn't too horrible to hear but it was still disappointing. I definitely did not plan to lug that huge piece of luggage back to Albuquerque, and going backwards 6-8 times a day was not conducive to our 10 hour long driving days ahead of us but we made it work. We have done all the backwards movement and are currently in the last week of going forward and should be done lengthening completely, again, in about 6 days. We left Baltimore with the following instructions: We have to get an xray sent to our doctor out there as soon as we are done lengthening and then one every month until he releases Zackary to full weight bearing. We also have to continue his bone density supplements and bone stimulator until full weight bearing and have PT 3 times a week from now until then as well. When I asked what the time frame is for full weight bearing all he could tell me was the average is about 4 months, some are more some are less. But then he followed that up with giving Zackary permission to start riding his bike on straight paths as long as he promised not to fall and told him he should be snowboarding by January! Let's just take that it for a moment and just imagine the 'mom look' I gave that doctor when he told Zackary these things!! No matter what the next few months hold we know we are home and together as a family and that's all that matters.

These are some of the great staff at the hospital that keep this boy smiling, and flexible.












Now on to the drive home. Less then an hour into the drive we hadn't even made it 50 miles! There was traffic, wrecks, a wrong turn by me and rain that slowed everyone down tremendously! Luckily this was only how the first day went :-/ Zackary and I drove to Columbus, OH to pick up my poppa so he could help us drive the rest of the way and we were only 2 hours late to pick him up. The first night was a little later then expected but we made the most of it and even got in 15 mins at the hot tub in Indianapolis where we stayed. The next day we took a long lunch in St. Louis and visited the Gateway Arch. So much fun! It was smooth sailing the 2nd and the 3rd day with not a single complaint from Zackary and he didn't even take Tylenol. This kid is seriously the biggest trooper ever! We made it home Sunday afternoon just in time to have a family get together at my house since Adam's brother was in town from NY. Yep, talk about hitting the ground running.

Well we have been home for exactly a week now and though the first few days were a little bit hard to adjust to with a bit of simulation overload for both Zackary and I and a lot bigger to do list then I ever remember having, but overall it has been good. I've been able to cook dinner for my family (on a real stove!) and even got to watch Johnathan lead his team to a 7-0 win in their first scrimmage. We also got to be a part of a friends daughters beautiful wedding, picked and scheduled Zackarys PT, have multiple walks with the puppy and have contemplated unpacking multiple times! Hey, I told you I had to say no to some things right?!






As we continue on with life I want you all to understand how completely grateful we are for the life we are given, the gift of our family and the blessing that each of you are to us. Thank you for all that you've done for us. The kind words, encouragement, money and support truly saved us in so many ways over the last 5 months. Though our battlefield location has changed from Baltimore to Albuquerque we know the fight is not over yet. We still have 4-5 months of recovery here but we know God has a plan that we trust and can't wait for Zackary's full recovery when he is able to run around with friends and play basketball again, oh yeah did I mention we signed him up for basketball?! The season starts in January! We have high hopes in God and PT.

We will continue to keep you posted on how things are going from week to week but for now I must start work for the day so I can make it to Johnny's first football game of the season! Remember when I mentioned I didn't care when I got home as long as I didn't miss any of Johnny's games?! Well here's proof of answered prayers! Oh and PT starts tomorrow so wish us luck!
Until next time,
Momma Miller

Ask me what I'm doing August 19th!

The last two weeks we have been staying busy with our routine of physical therapy, tummy time, casting, bone stimulator machine and Sundays full of movies and Taco Bell. We also got out of said routine with a getaway to the Baltimore Zoo and Zackary is officially on summer break from school so there has been no math, English or homework since last week. I've yet to hear any complaints about that one. We had a great time at the zoo as you can tell from the pictures below and it helped pass the time after getting not such great news at the last appointments.

But now it's been two weeks so of course we've had another appointment, xrays and all. The doctor tried to use another baseball analogy to tell me how close we were to going home but I just looked at him. (ask anyone who truly knows me how much I love baseball. Insert eye roll here) Then he said we were at 7cm, only 1 cm away from total length! That's HUGE for us! So then the drumroll went off in my head and I asked to magic question of what rate of growth we were going to be at for the last centimeter. His response was mind blowing... stay at 3 times a day. That means we will be completely done lengthening in 2 weeks! TWO WEEKS!!! Home is in our sights! Once we are done lengthening we have to stay another week to finish up PT here but then we will be free. So again I say, ask me what I am doing August 19th and my answer will be driving home! Home for good, home to my family, home to life! Life will be our 'normal' with physical therapy, pills, bone stimulating machines and continued xrays but it will all be done at home. Every night we will be sleeping in our beds, eating at our dinner table and rubbing on our puppy every day! So three weeks from tomorrow we will be saying goodbye to our home in Baltimore. No tears here with this goodbye! So yes, great news. Final news. And we will continue to keep you updated on how smooth the last month or so will go. Thanks for the continued support and encouragement over the last month we have out here. Now my question to you, what are you doing on August 19th? If you're not too busy do mind saying a prayer for safe travels for our 28 hour journey home?! Thanks in advance.

Until next time,
Momma Miller

Are you home sick?

So this post comes with a warning: We had our doctors appointment only 1 hour ago. I usually give myself time to calm down from (good or bad) news, let the information sink in and think before I speak, or type in this instance, but I just can't today. So let this be a warning that this will be full of raw, unedited emotion.
I'm not known for being the most optimistic person, I see myself more as a realist. This helps me to not set myself for a big push off of a high pedestal of expectations in any aspect of life, but especially medical things because if there is anything we have learned over the last 11 years is that anything medical is never set in stone. This time though I let that little bug get inside my head that said if the doctor says great job keep going at this appointment then we would be home in time for the first day of school for Johnathan. This is a day no mother ever wishes to miss!
"Bones looking good!" "You're rounding third and heading to home plate" the doctor says. I start to smile, here it comes!! The end is in sight and he's going to give us going home news!! "But I want to slow down the rate to 3 times a day just to be safe." ...and face plant! Dropped head first off that pedestal into reality. I should have known better! I lost my smile instantly. But I want to go home is all I kept thinking and I guess it showed on my face because the doctor looks at me and shifts his demeanor and says "oh, are you home sick?" Am I home sick?!?!? My response was, I was home sick a month ago, that doesn't even begin to describe what I'm feeling. All he could say after that was keep doing what you're doing, he is looking good and looking longer just looking at him and we'll see you in 2 weeks. And that is all I can think about...are you home sick? I'm not just home sick, I am overly exhausted on a daily basis of being away from my family, my friends, my home, my dog and the under appreciated dry heat of NM! YES, I am home sick. I want a hug from someone over 5 feet tall. :-/ (although Zackary hugs are pretty amazing if you've never had the pleasure)
Please do not get me wrong, I appreciate all the kind words and encouragement via email, text, phone calls and cards, and please don't stop, but there's just something about getting a hug when you're down, or happy for that matter. that is truly taken for granted by those who can do it whenever they want. Let me make this clear as well, I know there was good news to be heard at the appointment like; we are up to 5.9 cm of growth! That is only 2.1 cm away from our goal! He is slowing us down just slightly and not making us reverse. Been there, done that, don't ever want to go back! And of course Zackary's health and flexibility continues to amaze the doctors and therapists and I am beyond proud of how strong my son is throughout this whole thing!
So with that all said, here I sit, still home sick, but there is no place else God wants me to be. I'm right in the middle of HIS plan for my life and my family's lives. I will see everyone soon as we have scheduled a visit home in 2 weeks from tomorrow (the countdown is on!) And even if I can't be there to drive my son to the first day of school I know I have an amazing support system at home that will continue to be a part of his life and guide him in the ways to create the well rounded man he is becoming. Plus I know for a fact I will not have to endure the crazy weather that is Baltimore winters and my family will all be together next to the Christmas tree soon enough.
Thank you all for listening to my rant, if you made it this far. I respect and love each one of you for your continued support and love to our family. Thank you!

Until Next Time~
Momma Miller

There's no such thing as too much!

     This smile says it all! We finally had good news at the last doctors appointment and we were able to take a deep breath and sigh of relief as we headed to Albuquerque for a few days.

     I have been praying for weeks on end that the next xray would finally show good new bone growth and the doctor would up our number of lengthening sessions each day. Well, he walks in and says 'the only problem we have now is his new bone is growing too fast and we have to double the number of lengthenings per day". Too fast? Too much growth? This was great to hear! But then we also had to be careful because if it grows faster then we are separating it then it will grow together ans we will not be able to lengthen at all. So needless to say we are very thankful we heard the good news in a timely manner.  Thanks to the bone simulator (ultrasound machine), pool PT and anti-gravity treadmill the bone is doing all the right things. The doctor has instructed us to increase our turns to 4 times a day (double what we were at and the original number of turns  we started at). 

     Not only does the increase in lengthening give us hope in getting the full 8 cm but it gave us a light at the end of the tunnel when it comes to getting home. Of course we know that every doctors appointment and xrays give us new news but since we are already at 5.5 cm and we increased to 1 mm a day growth it looks like we will only need 25 more days of lengthening and then we will be done lengthening! We will have to stay another week or two to finish PT and have them find his stability to ship him safely to Albuquerque PT, but we can start counting down to 6-8 weeks! It seems so short compared to how long we've been here and how long we've been preparing to stay at the slower growth rate! Needless to say we are beyond excited on the news that was given, we've also been so busy that I haven't updated and we have another appointment in 6 short days (fingers crossed for more great news!)

Please continue to pray, give good thoughts and support our family in any way you can; it's truly how our family makes it through every day!

Until Next Time~

Momma Miller

How long have we been here?!?!

June 24, 2016 marks 3 months...13 weeks...93 days...133,920 minutes that we've lived in Baltimore. That's something I've come to terms with. We live here, we're not visiting, we're not passing through and we aren't here for a short time. It's been 25% of the year to date and we still don't have a definite go home date yet. With that said, there has been a lot of things going on, inside and outside the medical world for us since the last time I've updated you all.
Medically speaking, we've gone backwards, and now slowly moving forward in his lengthening (check the last blog for details), Zackary is healing from his toe surgery nicely and his weight bearing is getting more each week. We had seen the doctor about a week ago and he said the bone is looking more promising, better news then lets go backwards for sure! He still kept us at 2 turns a day, but I'm holding my breath for next weeks appointment where he will hopefully up the movement per day. The ultrasound machine is going strong at an average of 8-10 hours a day of wearing it and he is really enjoying the pool time even though it's mostly exercises and he doesn't get 'freetime' swimming that he wished for. Another new thing he is doing is the anti-gravity treadmill, the 'alter-G'. It is the coolest machine that brings me to tears every time I watch him walk without assistance. It's a small glance into a future that seems so far away most days. Each of these exercises actually require him to bear about 50% weight on the left leg. This is something the dr alllowed under therapist supervision that will hopefully stimulate bone growth. Since we are lengthening at such a slow rate, his flexibilty continues to kick butt so we actually do not have PT on tuesday or thursdays, but once we up the lengthening that will go back to mon-fri.

       







Where we spend many hours Monday, Wednesday,                                 and Friday










On the non medical side of things the last couple weeks have been pretty full considering. Adam's mother Laura was able to come out here for about 5 days so I could fly home for a quick weekend break. It was beyond appreciated and I think it gave Zackary and I a little change of pace amongst the mundain daily tasks. Though Laura didn't quiet fall in love with the big city living, she did provide Zackary with new memories and adventures and that I am thankful for! While I was at home Adam and I were able to play in the Carrie Tingley Hospital fundraiser of mud volleyball. This was a place that Zackary was seen at for many years so it always is an extra bonus to give back. Plus it forces us to have a fun day full of mud and memories! Going home was very relaxing for me and it made us realize how important HOME is. We always appreciate visitors, like the one we get tomorrow morning in a ballooning friend Mark, but in order to be recharged we have to go home!

We have decided that any more visits between here and the end will consist of Zackary and I going home, instead of Adam and Johnathan coming out here. Home is good for the soul. Plus I have a teenager who is putting in a full time job number of hours into football every day. So, Zackary and I will making our first trip home together in a week from today! I wish it was for nothing but good things, but sadly it's not. A week ago yesterday we were forced to go to doctors appointments filled with tears in our eyes when we found out my grandfather had passed away. (My step dad's father). This was hard for me on so many levels but to be away from my family during this hard time was heartbreaking. So our trip back for the 4th of July will include a funeral. I know my family understands why I'm gone but I would have done anything to be home with them instead. He will be missed, but we will be spending the whole long weekend remembering him, laughing and making memories as a family and I know he would be happy to know that.

This coming Thursday will include a pt visit, swim therapy, a follow up doctors appointment (hopefully filled with nothing but great news and positive movements) and packing for home! So needless to say it'll be a busy day but it will be worth it and I will be posting all the new doctor news once we get it. Thank you all for continuing to support us through this chapter of our lives that we are praying will end in 1,2 maybe 3 more months. Please continue to pray with us and spread the word for those who may want to support us as well.

Until Next Time~
Momma Miller

A Familiar Sound

One of my favorite things about Zackary is listening to him snore, it always has been. To me it means he is at peace, he is not feeling any pain and that he is still breathing! Hearing him snoring in the post-op/recovery room is extra comforting, and that is what I am listening to as i sit here and type. Yep, back in the recovery room. In the last 36 hours we have gone from our normal lives to seeing a podiatrist about an ingrown toenail for Zackary to a pre-op appointment and no food after midnight because we had a minor surgery scheduled for today at 2:30! Needless to say it's been a whirlwind.
Zackary started complaining and we started treating said toe nail (luckily on the opposite foot of the lengthening side) about 3 weeks ago. There was a trim and some hydrogen peroxide used over the last few weeks with little change but over the last 4 days it went from being sore on one side to the whole toe being swollen, red and scabbed over. So we saw the podiatrist yesterday and he said it is/was definitely infected. Infection is a scary thing when it comes to Zackary so they put him on antibiotics right away and scheduled a surgery for today. Everything seems fine overall and it was very much a preventive measure and minor surgery.
We don't love to ever put our baby into surgery but this was something that needed to be done to relieve pain and prevent future issues. He was in and out surgery in less then an hour and is slowly waking up and plan on being home in the next couple of hours. There's very few restrictions once we get home. He will still be able to weight bear as usual tomorrow and will have the bandage off  in a couple of days. The downfall about getting this done is he is now not allowed to do pool PT for a week and he was pretty excited to start that tomorrow.
Good news that came this morning though was that he got his bone stimulating machine! This is a cool contraption that we put on his leg for 10 hours a day. Yes that's a lot, but as we figure out how to fit it properly and stablize it he will be able to wear it when he sleeps. In addition to the forward motion on the lengthening that we started yesterday we are hopeful that the growth will continue to increase each day!
So, although the last few days have been a blur to say the least, I am thankful to be listening to my baby boy snore and even give me a smile just a few moments ago. :-)
Until Next Time,
Momma Miller

PS: any and all prayers and good thoughts are beyond appreciated! Thanks a ton!

The opposite of forward is backward

Webster dictionary defines backward as: in a reverse or contrary direction or way, toward the past, or toward a worse state. I have never once looked at our situation as going toward a worse state or when we got not so great news did I think we were headed to the past, until now.

One of the hardest parts of the doctor’s appointment every 2 weeks or so is going by myself. Will I remember all the things he said so I can share with Adam (and others) later, will I remember all the questions I have accumulated since the last appointment, will I convey all the things PT wanted me to? Well, I've gotten really good at taking notes and have the dr's assistant on auto email but this week was a new one, he had me completely speechless! I was bumbling, fumbling, blanking out on everything else that was said after he looked at me and said "the new bone growth is not looking good. It actually has me concerned and I really need him to go BACKWARDS a centimeter in length." Backwards, the reverse direction, toward the past, where we have been? One centimeter ago we were hopeless, feeling like we'd never get past our half way mark and now this. Backwards. ouch! Deep breath, you're the mom, pull yourself together! Don't cry in front of the doctor. What would Adam want to know? How does this happen? What can we do? HELP!

After a few moments went by of nodding my head in agreement of everything the doctor said I was refocused and ready to face this head on. So, here's what I learned, or at least the part I remembered so I could share it with you; There is actually new bone growth occurring, just not very much, and not at the level the doctor was wanting. They do not want the bone to get separated so much it won't grow back together so we have to stop the lengthening. The reason he wants us to go backwards is to give the bone less separation and to hopefully stimulate the bone and remind it what it's supposed to be doing. We usually have been growing at a rate of 1/2-3/4 MM per day but since we are going backwards, there is no tension on the muscles so we are actually able to go backwards at a much faster rate. The doctor wants it done in 4 days. So we have a timer set for every 45-60 mins to do a shortening session. Then, when we start going forward again we are to do so at a rate of 1/2mm per day (our slowest forward rate to date). We came home stunned, to say the least. He has been doing so amazing at PT, never missed a pill of bone stimulator and here we are having to take away 20% of the growth we had gotten to at that point.

Even though we are going the contrary direction we are supposed to, we are doing everything we can in our power to do it the best we can. About 2 hours after the doctor’s appointment we got a call saying the doctor is going to lend us his traveling ultrasound machine to stimulate the bone until our insurance will cover our own at the beginning of next month. We will be getting that on Wednesday. And then at PT on Friday his therapist decided to add pool time to his therapy hoping that will stimulate growth as well, and we all know how much Zackary loves the water! They will also be taking out 1-2 pt sessions a week since we are not stretching the muscles at a high rate. That will go on until they up our rate to more then twice a day. This saves pt dates/insurance coverage stuff. We have another appointment in 2 weeks and we are expecting to come out with amazing news of bone growth, flexibility and higher growth rate per day. Realistically we do have to see the big picture of this backwards moment.  It will add days, possibly weeks to our time out here. We were hoping to get home the last week of July but now I'm praying for before school starts, would you mind praying with me? It's much appreciated. We are willing to do whatever it takes to make this everything it needs to be for Zackary but I know our hearts, hope and his bone would sure get strong if we were at home as a family.

Speaking of family, Adam and Johnny came out for a week of summer vacation before football took over again. It was perfect timing too because the week they were here Adams brother Ivan was singing at Carnegie Hall in NYC so we took a quick 3-hour drive over there and appreciated every minute of the 4-day trip away from drs, therapists and our dorm room. We enjoyed sightseeing and just being together. It went by all to fast but it was worth it for the memories made! Now we are back to the grindstone, or new grindstone of continuous shortening, work and PT every day while Adam and Johnny are back home enjoying the nice dry heat. But hey, tomorrow's movie day so I can't complain. We sure are blessed every day because we have each other, and that includes all our family and friends! Thank you for your continued support, prayers, good thoughts, check ins and memories. Thank you for being a part of our story!

Until Next Time~

Momma Miller

    

Reppin' NYC at x-rays.......new machine to show more bone detail

At Carnegie Hall in NYC

No one ever said life would be.....

No one ever said life would be simple, fun or fair. That was a poster that my 7th grade language arts teacher had hanging in her room.  I read it every day and it's been engraved in my mind ever since. Those are words to live by no matter what type of situation you are going through in life. Being away from home for over 8 weeks now you can't help but miss every day things and long for hugs from people that are so close in facetime yet so far away, but when we agreed to this surgery we were not given a prescription of simplicity or fairness, but we are doing our best to make it fun, or at least tolerable.

Mother's Day weekend was quite the new experience for us.  This was the first time I wasn't with my mom or Adam's mother, it was rough to say the least. I will never take for granted how close our family is (emotionally and geologically).The good part however was that my little family was all together for the first time in over a month.  The tears were plenty when we picked up Johnny and Adam from the airport and the memory making went on for 3 days. We had a seafood dinner and walked around the harbor one day, then spent Mother's Day sleeping in, going to see Captain America (the joys of being a mom of boys!) and ate at our favorite place Steak N Shake.  Needless to say, it was a great weekend but it went by so quickly! By Monday night they were gone again, back home working and finishing up the last few weeks of freshman year and Zackary and I were back in our routine of PT, school and work, PT, ping pong and games. I'm so glad they made it out because it seems the longer we are gone the quicker and harder homesickness hits. Here's a few shots from our weekend.

 

When it comes to life in general things are going okay. This has been a week full of homesickness. I don't get to be there for my sons last week or school or help him study for his finals. My sister is planning pool days with out me (HOW RUDE) while I sit indoors because it's rained for 30 days straight, my nieces and nephews are growing way faster then facetime can keep up on and every day that goes by is one step closer to Adam and I's 14th wedding anniversary that we will not be able to be together on. Not to mention I haven't hugged my parents in months and my puppy hasn't licked my face in forever! Needless to say the pity parties are strong on some days but overall I am so extremely blessed by the opportunity to be here for my son every day, take him to every appointment, administer all drugs and perform all services needed to in able to get the maximum growth for him. I was blessed beyond belief by a close friends daughter (the Chadwicks are my hero) who donated a computer to me for my new job and it has worked flawlessly and given me an opportunity to find something I really like to do while staying at home and talking to my sister every day! Like I said, add in Taco Bell and movie Sunday Fun days and each week is a good one for us.

Our most recent doctors appointment this past Monday didn't come with great news which has made for a rough couple of days but there wasn't horrible newsso that's good. The doctor says there is not enough 'fluffy bone growth' showing up on the xrays (I can't see anything at all) so they backed down his lengthening rate. He is now down to 2 lengthenings a day on even days and 3 times a day on odd number days. This will cause our trip to be longer but give his bone more time to grow.  We continue his bone growth supplements, added milk and now the doctor is looking into insurance covering an ultrasound machine that will stimulate bone growth, but it usually doesn't get accepted until you've had a few unsuccessful months (not just one and a half), so we are keeping our fingers crossed.The doctor is pleased with his continued flexibility and incision healing and he is still infection free so we are always excited to hear that!

As usual we will keep you updated as things occur and I have to thank everyone for their continued support.  Hearing that we will be staying longer adds not only to missing home but financial stresses as well so please don't hesitate to pass on the gofundme page to whom ever you can think of.  Each day is that much easier when you know you don't have to worry about how to handle next months rent or the next piece of equipment insurance is about to bill you for. And in case anyone asks, this is the face of the one they will be supporting, the fun to my simple,fun and fair life, Mr Zackary Titus!
                          

Until Next Time~
Momma Miller

My Sleeplessness Equals Good News

It's 1am, what am I doing awake?! My to do list is short, my day is scheduled and my angel of a son is sleeping soundly in the bed next to me. I can't complain, I also can't fall asleep. So instead of tossing and turning or flipping through one more social media site (don't worry, I get my daily fill and can tell you who's dating whom and who wore the prettiest dress to the Met Gala yesterday) I will update the blog with nothing but good news!

Today (Tuesday 5/3) marks 6 weeks of surviving daily dr visits, high humidity, weekly movie breaks and answering the age old question of "do I really have to do school today mom?" Contrary to popular youth belief the answer still hasn't changed mon-fri no matter how many times you ask, how many kisses you give or what time of day you pose the question. If you can't tell by above comments our lives have turned into a very systematic daily grind and I think it's helped the time go by quickly. However time seems so slow when I think about the last time I saw my husband, teenager and puppy :-( lucky for me I get to see 2 out of the 3 on Friday for a whole weekend!

Sorry, back on track to positive news... Friday marked one month of PT so they did his re-evaluation and he did AMAZING! The therapists are very proud of his continued movement and he even has an increase of 5 degrees in the hip area, while his knee is flexing 90 degrees or more! This is huge for his ability to continue lengthening and not to toot my own horn (because it's obviously all Zackary and his ability) but they said they know the flexibility is being aided greatly by how hard we (he) are working at home on our pt, tummy time and casting.

 In other good news we saw the doctor today in our bi-weekly check up. He's seeing positive things in the X-rays, like usual. He says there's almost 3cm of growth (going for 8cm total) and the rate we are lengthening at is perfect. We will continue to lengthen 3 times a day at .25mm per time, and for you non math people that's about another 69-70 days of lengthening, which gets us to the middle of July! There's always a chance of speeding up or slowing down but as of now we can't ask for better. He also continues to be infection free which means we are about 2 weeks away from being cleared on that! There's still not a ton of bone regrowth showing in the X-rays but we were told that's normal and obviously X-rays can't show everything and the healthier nutrition we are focusing on along with the bone growth supplements he is taking the perfect combination for Zackary. Here's a shot of X-ray day (as we call it) and of course, he's got a huge smile on his face. Also if you can see it, the bone separation is on either side of the huge rod going through the middle of his leg.

The last good news is pretty basic but important for you all to know: we are doing really well out here in Baltimore, missing our home for sure, but still doing well. We make the most of every day, play lots of ping pong, go for walks when it's not raining and love face timing anyone who will participate, oh and if you have the app KIK Zackary loves to chat with people all day! LOL So thank you all for your continued support (financially, emotionally, and spiritually) and love. We truly feel it all the way out here. Plus, you gotta know it's not that bad when the one who's had it the roughest leaves little notes like this for me in our daily log journal. He sure does have my heart in his hands!

Until Next Time~
Momma Miller
















                                      

4 Weeks Down!

Hello All,
     Well we've officially survived 4 weeks here in the 410! (that's the area code for those who don't know) We've been through a surgery, hospital stay, over a week without a car and now we've tackled finally getting into a routine of school, PT and leg lengthening and did I mention I took on a job last week too?! Why not, right?! Roll your eyes now but I'll get into the details about that later.  But first, check out this smiling face that I get to enjoy every day! Why can't we all be so happy when it comes to being in daily physical pain or just dealing with traffic...think about it!

 
   Adam and Matthew came out last weekend and Matthew stayed to day before flying off and Adam stayed for about a week.  He has come and gone and we enjoyed spending a lot of time playing ping pong and even giving mom a day off! We were even able to enjoy a nice breakfast with ballooning friends driving through town at a cute local place that was on 'Diners, Drive-ins and Dives' on the morning we took Adam to the airport. Zackary and I also ventured out on our own this past weekend to enjoy a movie, Zootopia. I highly recommend it! Baltimore is definitely not home but we are starting to get use to the roads, suburbs, weather and culture for sure. Oh and for the record, I miss my teenage boy (yes I said it) and my puppy very much so if you happen to see them please give them a big hug and tell them it's from me!!!
 
     Yesterday we saw the doctor for our second follow up.  The xrays came back great and the doctor was very pleased with the 1.4 cm separation you could see on the screen.  He said since his pain tolerance and flexibility has done great over the last week and a half they will allow him to continue lengthening 3 times a day.  He also mentioned that we will start to be able to see bone growth (hopefully) in the next xray we get in 2 weeks. When it comes to the bone growth we are praying for they upped his protein intake and asked him to be put on Silical; this is a supplement regiment that goes with his daily multivitiman that promotes bone growth.  It's an additional 7 pills a day (and $90 a month) but if he doesn't produce the bone then they will have to stop the lengthening and we definitely don't want that!  Dr H also said that Zackary is a poster child for incision healings and there are no signs of infections so this momma was able to take a big sigh of relief! Check out the growth on the xray....

     Now to that whole job comment...If anyone knows me just a little you know I can't just sit still.  Before we came out here I was working a few hours a week at my store, Buckle, and I loved it and miss it every day!  So, when my sister called and said she needed help doing computer work and answering phones a few hours a day mon-fri I couldn't resist.  It gives me a little bit of focused 'me time' while Zackary does school but don't worry it doesn't take away from our daily ping pong tournaments, weekly Taco Bell visits or anything else that Zackary finds important! :-) Also, even though it's small in the grand scheme of things all I can say is every penny counts. 

     We are one month into our 4 month stay and we are already almost half way through the money we raised before coming out here.  Please know that we are beyond grateful for every dollar that has been donated, they have been prayed over and spent wisely, I promise!  But if I could just take a quick moment and give you a snap shot of what it's like out here maybe you could take the time to spread our gofundme account just one more time, or think of one more person that could help out we'd appreciate it more then words can say!  The home we stay at is about $2000 a month.  That is a lot and we've looked into other places, (hopefully staying with family friends once our appointments aren't daily!) I even toured the Ronald Mcdonald House yesterday hoping that a room available would be worth the move (they are way less expensive and feed us daily!).  Sadly though coming out of there Zackary and I felt that it wasn't a good fit for us.  The hallways were tight and the bedrooms were even tighter.  They were not very wheelchair friendly and every turn we made I either hit a wall or had to pick up the wheelchair to maneuver.  If there ever comes a time when Zackary is in a wheelchair less then 90% of each day we will definitely look into it again!  Also, We are also having to go back and forth with our insurance company because we are only approved for 35 PT visits and we will need an excess of 100 by the time we leave and when insurance stops covering we will have to pay $200 per visit.  At this point it's looking promising for them to cover the next round of the 30 sessions requested but we have no clue when/if the approvals will stop.  These are just a couple of the things we have going financially not to mention food, airfare and other medical expenses so if anything if these could be things to pray about and let people know about.  Again, we thank every single person who has donated up to this point and all the good vibes are felt daily I promise!

    On that note I must bid you farewell.  It's time for lengthening, at home PT, casting and dessert ;-)  I hope this letter finds everyone well and I'll get back with you soon.

Until next time~
Momma Miller
    

2 steps forward 1 step back

 

     If you've ever dealt with medical, or really anything in life, it never seems to be a clear uninterrupted path from beginning to end with no caution signs, detours or peaks and valleys; but to be honest if it was that 'grand' then it wouldn't be life, we'd never learn anything and there's no way we could be as grateful as we are during the good times in life.  As we end this week the good has definitely come with the bad but no matter which won, we survived and that I am proud of!  When it comes to this blog I'm going to be honest so please don't take my updates as ungrateful or angry...it's just life. 
        This week we had our first post-op doctors appointment, another full week of PT under our belts and made it a whole week without a car and Adam.  This week was a little rough emotionally but watching Zackary improve everyday was great. 
   When it comes to PT we received the calendar for April and for the whole month we are scheduled Mon-Fri.  This is not a surprise at all but I think it made it more real to see it all written out knowing this was life for right now.  Zackary has done AMAZING at PT and pushes himself more then he should most days.  The therapists are very pleased with his progress and continue to remind us that this is not the norm and at some point he will actually hit a wall and most likely regress a little and that's why we are pushing him so far now.  I'm also getting pretty good at our in home PT and seeing Zackary stretch farther then he ever did even before the surgery!  This week another thing got added to our schedule (this was the hard part of PT this week). Monday morning he was fitted for a removable cast that he has to wear twice a day for 30 mins each.  This makes his leg stay straight which is one of the motions he will lose first.  He's done great with it and the therapist said that at some point, if he needs it, he will get tighter bands for resistance and possibly sleep in it.  So, this is how you'll catch Zackary twice a day.....

     The doctors appointment yesterday was also full of ups and downs.  After PT we headed to another floor of the hospital and got xrays and a check up by Dr Herzenberg.  He said he is very pleased with the separation of the bone which means the lengthening part is going well, but he's not completely happy with the amount of new bone being produced.  He is worried that the bone could separate to much to where the new growth wouldn't be able to connect so they backed down his leg lengthening sessions from 4 times a day to 3 times a day.  It's not a huge change but it makes it 96 days from today for total 8cm growth as opposed to 72 days.  He did say this is common and if his bone starts to grow quickly then they will up him back to 4 times a day so not to worry.  He reassured us that it's a week by week basis and he has no worries.  We do go in every 7-10 days for xrays and consultation so who knows what will happen on the 18th (our next appointment).  He also was very pleased with his incision healing and his flexibility.  He says that the main reason we would ever have to stop the lengthening process early would be if he starts losing the motion needed in his knee to walk properly.  In his words 'we'll never give up flexibility for length' and in the long run it makes sense.  Here's a look at the xray (same xray just in one photo the growth is pointed out).  It sure is amazing all that modern science/technology can do.

   

     The rest of this week has flown by with a few hiccups in pain for Zackary which sadly we were told is actually the norm and the therapists were wondering when it would kick in for him.  This is so hard to watch as a momma, but we are seeing this as growth and staying on top of Tylenol and ice.  We've also had a lot of fun one on one time and Zackary is quickly becoming a ping pong master (yes he plays in his chair) so if he asks you to play prepare to bring your A game!  Overall the week has been more good then bad for sure, so now we just pray for high flexibility, low pain and great growth!

 

Until Next Time~

Momma Miller

First Things First

     First off, let me start off by saying THANK YOU! To everyone that is in our lives sending love to us one way or another we thank you!
    Today marks the first full week of being released from the hospital and I must say we are leaps and bounds farther along then I thought we'd be.  Zackary is down to tylenol only when he wakes up, right before PT and then bed time.  For the first time yesterday he lifted his leg about 2" off the bed all on his own.  This week coming up with be our second week of mon-fri PT at the hospital and I must admit that I think everyone has already fallen in love with Zackary, but who's really surprised by that?!  Yesterday we also started 'tummy time' for the first time.  I swear we are back to having baby techniques sometimes but luckily I loved that stage and it was something new for Zackary and he says it's a great rest from all the pressure on his back side.  He even got to sleep that way last night and I haven't seen him sleep that hard in a long time!
     Tuesday was the first day that we started leg lengthening and so far so good.  We do .25 mm every session and we do 4 sessions a day.  So by the end of today Zackary's leg will have grown 5mm total.  This is a great start to the 80mm total we are hoping for.
     Tomorrow also marks our first day without daddy and brother.  Adam and Johnathan head home around 2pm tomorrow afternoon and will leave Zackary and I here to spend lots of time coloring, playing ping pong, watching movies and taking walks (well I walk, he rolls).  He is not quite able to sit up completely to do things at a table for long periods of time but we are becoming very creative at coming up with ways to adapt.  He's also very content with wheelchair time in different places doing different things.  I caught him the other day enjoying his first window time...

     This photo embodies all that Zackary is; adaptable, content, accepting, patient, calm and all around great kid!  As long as you feed him taco bell every once and awhile and make sure his electronics are charged he's good to go.  

     We've ventured out to walmart a few times and even started cooking for the first time this week.  Both exciting things after the last couple weeks we've had.  We are starting to do well in rountines and though night shift has seem to become our norm everyone is sleeping well and doing what needs to get done.  

    

Until Next Time~

Momma Miller